Pistol

I know of these from working in the hospital. We used to use them on patients high-risk for blood clots. IMO not a realistic option since they only give relief while applied - meaning you would have to be in bed while using them. Better to just move your legs - even if bedridden. We can get our blood flowing equally by simply exercising our leg muscles while in bed - but better yet if we do it while upright.

I have found that when I am rested and balanced I sleep well, even have dreams. When I do too much, or am triggered, I sleep poorly. I have to take naps every day or I will be too wired at night and not be able to fall asleep. so - in my case getting hyper is the reason for insomnia - if I can avoid hyper then I can sleep. If tht makes sense.

Believe it or not - I once tried to give an article about POTS to one of my docs and he said: " Sorry - I don't do chapters ". I was wondering - well, how then did you make it through medical school? He said that I was his only ever dysautonomia patient and if there were more he might read up on it but since it was only me …. I still have not forgiven him!

@p8d - glad to hear I am not the only gun in the closet! -- Yes- I am feeling better, was back on my rowing machine for 1 minute today AND did the dishes. But this only due to the extra fluids I was able to receive b/c I have an awesome PCP who works with me and would rather see me at home than in the ER! IV fluids - IMO - are the single most effective treatment for flares IN MY CASE! P.S. Don't ever stop shooting - even if it backfires!!!!!!

Thank you @DizzyPopcorn - SUPER interesting!!!!!

Yes - me too! I cannot handle big stores at all. It can be grocery stores, hardware stores,clothing stores etc - I immediately become antsy, even in my wheel chair. I would get completely irate if I had to stand in line! I would freak out! Too many times of loosing consciousness in my memory bank! I no longer subject myself to stores - unless it is brief, husband at my side, wheel chair under my butt. It is one thing I do not miss!!!!!!

Hi @Scout - I don't crochet but I do knit. I used to knit sweaters, scarfs, socks … now I usually don't have the energy for it. You know that you can crochet purses and handbags tht are really pretty and not hard to make? See if you can find directions online. Enjoy your new hobby!!!!!!

@KaciCrochets - I too get GI issues when I flare with hyperadrenergic issues, for me they come hand-in-hand. PM me if you would like details - I am always here for you!!!!

I am sorry @dancer65 - I am not sure but what I would personally do for the itching is warm oatmeal baths. You could add Epsom salts to it for the muscle burning. I have no clue what may have caused this for you. Have you strained your muscles in any way?

Good One, @whoami! I have a song too : Another One bites the dust!!!!! Q -What recipes sound like what we feel like? A - Scrambled Eggs on a bed of wilted Lettuce A - Plain Jello

@whoami - I went through all of the stages of grief - denial, anger … eventually acceptance. It is human and natural to feel that we do not deserve this and that we should not be afflicted with this. I thought: how can I still be of service to others when I cannot do anything? Why me? ---- That is all over now. I can do a lot - this forum, helping others in any way I can. I keep up with my friends and family by phone, I pray for people that need it or cannot pray themselves, I try to share what I have learned through this illness. I DEFINITELY am a wiser, more patient, less self-centered person now. And I have learned that there is so much we can give!!!! @Scout - how great that you picked up crocheting!!! You can do all sorts of good with that. You can make things as presents ( pot holders or blankets, even curtains )- I know an older lady in our community who crochets baby hats and delivers them to the maternity ward to be given out to the newborns. Simple yhings like that can connect us to the world, let us be useful and also be aware that what we CAN do is what others cannot b/c they are too busy. I myself, with my background of being an RN - receive many calls or questions from people around me asking about medical things. This is a way I can still use my education - and if I do not know the answer I know how to research, since I know the medical lingo and can go through studies etc. Whatever we learned to do - we can still use this to be useful to others. It is so important that we see that!!!

@whoami - I did give up. When I became disabled nd realized that there is no cure I became very depressed and did not even want to live like that anymore. But I did not want to not be with my family so I sought help, talked to my doctor and my sister ( a therapist ) and got myself out of that slump. Today I am happy again and enjoy my changed life. I learned to not miss the things I lost but to be thankful for the things I have and can do. We really can live with anything if we put our mind to it and have a support system around us.

Below are a few questions about POTS - add your answers! Q - What profession can a POTS patient not do? A - Stand-Up comedian! Q - What songs are written for POTS patients? A - I'm free falling ( Tom Petty ), I'm still standing ( Elton John ) Q - What movies were made for POTS patients? A - Panic room , Awakenings, Out of Control

@Clueingforlooks - do you take any medications? Maybe you are simply not well controlled on your medications?

@lieze - I receive home care services and also have medicare ( due to SSDI ). An RN comes once a week and as needed to access my port and start IV fluids. They would help me with other things too ( since I am home bound ) but at this point I do not need them ( I live with my husband and daughter and we manage ). I did have home PT once but it was useless. I could only stand 2 minutes or become symptomatic, so they had just do exercises lying down. They are valuable to do when I am bedridden, though. The good thing about homecare is that when I am in a flare and need help they come out, call my doctor for instructions and I do no longer have to go to the dreaded ER all of the time! It has been one year since getting IV fluids at home and I have not once been to ER or hospital!!! And - despite a few faints here and there - no seizures!! So I am very happy with the home care services in my case.

@whoami - I know that often when experiencing a panic attack your BP and HR will be high - so if there are NO changes I am not sure that that would necessarily rule out an autonomic event. I hope your appointment with the autonomic specialist will happen soon. In my case I was so relieved when I ws diagnosed by my specialist - it was validating to finally know what I have and that all of this is real. Hang in there!!!!!

Not really, @lieze. In my case I am very sensitive to the changes of BP and HR and can tell when I need to worry about it. I can be 70/50 feeling great or 140/90 ready to blow. I personally no longer go by numbers but how I feel, since my BP changes so rapidly. It is important though to know our readings every day so we can see a trend - or notice any changes in trend. This can be a clue to detecting the need to change medciations.

@Clueingforlooks - have you ever tried sports drinks, such as Gatorade? They are specially formulated with several electrolytes that provide instant hydration.

@Scout - I experience these attacks as well, although not as often any longer. My most recent one was while the nurse was here to access my port on Friday. I was on the floor crawling to get to the bed ( my BP swings crazy like your does in fare as well ) and passed out. Afterwards, in bed, I am trembling, shaking like in a deep freeze all over, teeth shattering, cold hands and feet and -yes, anxiety over my symptoms and that I am going to pass out again. It took several minutes to stop and then it would return as soon as I had to get up. It only stopped after an hour or so of getting IV fluids, I could walk again and my orthostatic symptoms improved. @whoami - these symptoms could easily be interpreted as anxiety or panic by an observer that does not understand dysautonomia and the mechanism behind it. And in your case it may be difficult to differentiate b/c you my have both. When you go to the ER make sure that they do not just take your BP and HR lying down. Even when in the ER after a seizure - lying down all is great but as soon as I stand up or go to the bathroom my BP and HR soars ( when I am in a flare ). So - they might think all is well with your vital signs b/c you were lying on a stretcher all day.

@lieze - that is the boat I am in, too. I often choose to stay home - even if I am having a good day - out of fear that it might be too much. nd that is not only considering myself - if I were to go shopping or to a movie with my daughter or even a church picnic - when I crash it's over and we have to go home. My teenage daughter often asks me NOT to go because she knows that most likely I will have to cut the event short. Plus - the days after nothing will get done b/c I will be in bed. So, Lieze - it is maybe not fear of the unknown but rather wisdom of knowing our limits!!!! Be well!!!

@whoami - I am so sorry you have to go through an ER trip. I used to have to go to the ER often - my PCP would actually send me there from his office, unless he just admitted me directly. In my case - due to my symptoms of tachycardia, high BP, syncope and chest pains - they always had to do cardiac testing ( which ALWAYS came back perfectly normal ). What ususally was the fix for me were IV fluids - they stabilize my HR and BP and stop the syncopal episodes. I hope all will be well with you, that your tests show nothing serious and that you have kind, compassionate and knowledgeable doctors. Be strong - and be well!!!!!!

Thank you @dancer65. I am already recovering and think I will be fine in a few days. Yes - I agree. IF we can manage to get out and do something then we always have to pay a price afterwards. Most people do not - and therefore they do not understand why we would choose to stay home instead of joining in the fun. We have to weigh the benefit of paying the price vs being safe every single day. And every single day can be a different challenge. I just spoke to someone who was surprised that I felt my condition was improved when I still have so many limitations. But I am no longer taking seizures, no longer passing out every day, no longer in the hospital every 6-8 weeks. I no longer have to fight the doctors in the ER and beg for IV fluids ( since I now get them weekly and as needed at home ). I m able to do basic home skills without passing out - a service I can do for my family. I am happy that I can do what I am able to do. nd the next time I overdo it I will prepare, expect and endure the consequences of "being normal".

@whoami - my nickname stems from always speaking what is on my mind. People used to say " she's a pistol".

@Derek1987 - the best way to handle this dilemma I have found is to EXERCISE in what ever way is possible and to change your meals from eating 3 meals a day ( and snacking in-between ) to 6 SNACKS a day. The Breakfast/ Lunch/ Dinner routine can still be done - just healthier choices. And in-between do snacks like Almonds, Pistachios, Veggies, Yoghurt, Cheese, Pickles etc … Drinking broth can be very satisfying, give a salt boost and hydrate at the same time. ---- Mostly I would like to recommend getting active and doing exercises. This helped me with weight control, depression and POTS symptoms. ( I know - exercise is the last thing you want but it helps A LOT and there are meds that can help you getting more energy, like Methylphenidate, Modafinil or IV fluids in my case ).

Thanks @toomanyproblems and @p8d --- I am really proud of me too. And I know I will go sneak out into the real world again - I just will do a better job at scheduling next time!!!! BTW - I am hooked up to my IV fluids right now and feeling so much better. I guess I might go out of town ...………………...………………..